Storms Don’t Last Forever

A few weeks ago much of the UK was battered by Storm Doris.  High winds and torrential rain affected many areas of the country.

One Thursday after arriving home from a morning out cut short because of the inclement weather; I watched the rain beating against the glass of my bedroom window, observing the dark grey clouds while I lay down on my bed battling the effects of chronic pain ravaging throughout my legs. I lay there wondering if and when this horrible, destructive storm will end.

Waking the next morning, after opening my bedroom curtains, to my surprise and delight I was greeted by beautiful blue skies and glorious sunshine.  It was then I was reminded that storms don’t last forever and that the sun always shines after the rain.

pexels-photo-197394

Furthermore, a realisation occurred to me that it could also be a perfect metaphor for life with chronic illness.  We all will, at some point in our lives, will experience a storm in our lives; a dark point that at the time feels like we’ll never get out of.  But, of course, nothing in life is permanent.  Our experiences and feelings like most things, such as storms are transient, before moving on, and making way for the sun to shine once more.

Of course, the definition of ‘chronic’ is something, usually describing an illness which is persisting for an extended length of time or one which is constantly recurring.  In this sense, living with chronic illness is like permanently living under a storm cloud.  However, although our conditions are permanent, our symptoms can sometimes be transitory, allowing a small piece of sunshine in our days.  It’s like Charlie Chaplin once said, “Nothing is permanent in this wicked world, not even our troubles.”

Symptoms, which are often persistent and loud, can on some days concede, the feelings and their effects being fleeting and mild, letting us have a rare, good day.  Even living with a long-term condition, therefore, doesn’t mean accommodating a permanent storm in our lives.

black-and-white-person-woman-girl

Things recently have been difficult, in my own circumstances living with a neurological condition with increased pain and trembling in my legs.   Some days it has been so bad that I wonder how I have managed to get out of bed in the morning.  On the worst days, it has felt like I was living in my own bubble, surrounded by large and dark storm clouds above my head because of the severity of the physical symptoms, I was experiencing and the emotional toll they were having on my well-being.

Despite this, however, I have still found little rays of sunshine throughout my days even through this turbulent times.  Even little things such as enjoying the feel of the sun on my face, especially after spending days inside, or enjoying the taste of my favourite bar of chocolate.  It was also my birthday last week, and although my symptoms did slightly dampen the occasion, it was still so lovely to receive presents, cards and messages from people who took the time out of their lives to think of little, old me!  These beautiful moments are small reminders that although it may not feel like it during this very moment, that storms indeed do not last forever.  Nothing is permanent, and these thoughts and feelings will not last forever.  This too shall pass.

Sitting here, thinking about the storms that roll in when living with chronic illness reminds me of my favourite quote from the author of one of my all-time favourite books, Louisa May Alcott.  She once famously wrote, “I’m not afraid of storms, for I’m learning how to sail my ship.”

IMG_20160913_121716

For me, it’s a truly beautiful reminder that the obstacles, challenges and difficulties that any of us face during our lives help us build strength and resilience, and ultimately it is these hardships that teach us how we should be living our lives.  For if it were not for storms, we would never learn how to sail our ships; we would never learn the lessons of strength or resilience that helps us through the dark times.  Of course, this is of little use during periods of distress.

As I continue experiencing this particular, and the often distressing symptoms that they bring, I will try and continue to remember that storms don’t last forever, and I hope you do too.

Or if not, I hope you find ways to create your own sunshine…

SummerEssentials

 

Advertisements

2017: A Year for Grace

2017 is, many would argue is finally upon us.

It is the time for new calendars, new diaries, and for many the promise of a fresh start as if January 1st provides a clean slate, erasing all of our past mistakes and bad habits.  As if the turn of a date on a calendar assures us that we will become entirely new and improved people.

 

welcome-2017-images
Welcome, 2017!

 

It is also the year when lots of people make ambitious and unrealistic new year’s resolutions which will inevitably be broken before the beginning of February.

For those of us living with chronic illness, however, making new such resolutions can be especially difficult as, well, our lives are completely unpredictable.  We wake each day not knowing how we are going to feel that day, or what we will be physically able or unable to do.  One day we can be living a seemingly normal life, running around doing chores whereas we can be in the midst of a flare the next, the only thoughts being how to survive getting through the day.  Some days we are able to live whereas others are about just existing.

 

scrabble-resolutions
It’s the time for making new promises to ourselves to make us better.  What are your resolutions for 2017?

 

With this mind, therefore, how can we make realistic and achievable resolutions when our lives are so uncertain, and our bodies unreliable?  We may have all the intention in the world to keep such resolutions but when living with chronic illness we are often not in control of our own bodies and instead are governed by the constant symptoms we endure.  Are we setting ourselves for failure by making such unrealistic expectations?  Could it also affect our already fragile confidence if we do indeed fail in these unrealistic expectations for the new year?

A new recent trend advises forgetting to make New Year’s Resolutions and to instead focus on just one word that sums up who you want to be or how you wish yo live your life.  The word, if given full commitment can not only shape our year, but also the person we become.  The word chosen is said to be a compass which can be used to direct our decisions and guides ultimately how we live day-to-day.

one-o

My word last year was HOPE.  Although many people would describe me as a positive person, I often felt that hope was out of reach because of the effects that living with a neurological condition was having on my life.  I wanted my life to be about hope; focusing on the positives instead of dwelling on life with chronic illness.  To be able to appreciate and embrace the small joys of life and celebrate the achievements, however small.

This year my chosen word is GRACE. Life with a neurological condition for me personally continues to be challenging and difficult.  Every day, the symptoms associated with my condition affect my daily existence dictating what I am or not able to do.  And that can be frustrating and burdensome.

Beauty!.png

According to its many definitions, grace is about being at ease with the world, even when life is arduous such as living with a life-altering medical condition.  To live with gratitude; being thankful for what I do have in my life, and being aware of the blessings that even challenging times provide.

Grace, for me personally, is also about kindness – showing kindness not only to others but also to yourself.  For those living with chronic illness, we are not always guilty of showing ourselves kindness instead harbouring feelings of regret and repentance of things we are not able to do or for cancelling plans whilst we are in the midst of a flare.  Often we harbour feelings of resentment towards our conditions, wishing them away and yearning to be ‘normal.’

But what if grace was also the acceptance that life is not always about trying to be a round peg attempting to fit inside the square hole.  What if grace is instead about finding our unique and individual strengths whatever our circumstances and despite the personal limitations that each of us is living with and developing those as best we can.

Grace is finding purpose in our lives; doing what we love and loving what we do.

And that is my wish for 2017.

What would be your one word?

 

 

 

 

 

HAWMC Day 28: H.E.A.L.T.H

306191_10150737763259254_36556179253_11203296_1524970998_n

Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon given prompts.

Tuesday 28th April: H.E.A.L.T.H 

Use ‘health’ as an acronym and come up with words that represent your Health Activist journey.

images-1

H is for HOPE

As I have written in earlier posts, hope is a vital ingredient for life with a chronic illness.  Hope acts as a survival mechanism for when we are at our lowest ebb.  It is what motivates us to overcome the obstacles blocking our path, to push forward and carry on living.  Hope is the line between creating and maintaining a happy and meaningful life despite chronic illness or being consumed by the negativity that illness can create.  Hope allows us to have something look forward to when it seems our future looks bleak.

images-2

E is for EDUCATING

The aspect I love is the reciprocal nature of being a ‘health activist’.  As much as my blog and my writing as well as my presence on social media helps to educate and inform others of neurological conditions such as the brain stem lesion I live with or the impact of chronic illness in general, I also enjoy learning of other chronic conditions and the impact that these creates in the lives of the individuals living with them.  I have learnt so much about other chronic illnesses from reading various blogs that I love reading and by getting to know others on social media; in fact, I have even been known to diagnose patients on certain medical dramas from what I have learnt from other bloggers and health activists!

imgres

A is for AWARENESS

An important part of living with a long-term health condition is self-management.  Therefore, to be able to implement a self-management programme it is important to be aware of every aspect of your particular chronic condition.  We need to be aware of potential triggers that can induce symptoms, so we can stay away from them as much as possible and not exacerbate the condition.  It is important to also be aware of anything that eases symptoms for when they do occur.  It is about making positive conscious decisions to help ease symptoms as much as possible and to improve quality of life.

imgres-2

L is for LISTENING

It is so important to listen to our bodies.  Your body knows what it is capable of, and so we need to be listen to them, especially if your condition is one which tends to fluctuate.  In order to be as well as possible we need to be aware of any changes in symptoms and act accordingly.  An example, and one which I have done a lot lately, after listening more to my body, is taking a rest when needed.

imgres-4

T is for TWITTER

I have come to absolutely love Twitter and use it a lot to communicate and connect with other health advocates, bloggers and spoonies in general.  As well as using it as a tool to promote my blog and the writing I do as a result, but I have also built a lovely support network with others who or have had experiences with chronic illness.  It is a great tool to use as a way of sustaining a role in health activism, by tweeting information, links and sharing other blogs regarding the condition being represented.

images-1

H is for Hobbies

Living with a chronic illness, it seems can often take over our entire lives.  It really does, everyday symptoms dictate to us how our day is going, what we can and cannot do, and so on. It can make us feel that sometimes we have no control over our own lives.  It is important therefore to have a life outside of illness.   One way to do that is to find hobbies and interests away from illness.   It is great to have hobbies as away of distracting oneself from debilitating symptoms and helps alleviate the effect of them on our lives.  Don’t let what you can can’t do interfere from doing what you can do!

My life and health in a ‘Word Cloud’

398362_10150737757134254_214524621_n

Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Word Cloud…Make a word cloud or tree with list of words that come to mind  when you think about your blog, health, or interests.  Use a thesaurus to make the branches of your “tree” extended further.

Screen Shot 2014-04-22 at 14.49.34

 

This is the Word Cloud that I have created.  It contains words that are related to my condition, the challenges and problems that the condition has placed upon my life, and other words that relates to health and living with a chronic illness.  It also contains words that have helped me through my darkest days living with a neurological condition – the social media platforms and the people that have supported me, the friends I have made along the way.

Keep Calm…and Stay Positive

As most of you know, that due to the unknown cause of my neurological condition is starting to get me down.  It is frustrating and disheartening when the doctors are unable to give you the answers that you so desperately crave.  It is simple – being undiagnosed is dejecting and can causes psychological symptoms such as depression.  All we crave is a diagnosis – a name for the cause of all that we go through on a daily basis.  A name that confirms that we are not crazy or that the symptoms are all in our head.

Due to the weakness in my legs as well as the severe dizziness and fatigue that I experience due to my undiagnosed condition, I am often unable to get out of my bed and so confined to my bed for days at a time.  Staring at the same four walls of my bedroom; a place where I spend a lot of my time anyway is not a positive experience.  It is often a painful reminder of my predicament; a predicament that I am an undiagnosed chronically ill patient.  Being confined to my bed, leads to feeling of loneliness and isolation – how many times when experiencing severe symptoms have thought you were the only person to be going through this experience?  Is that a yes I hear?  Me too.

However, Voltaire once stated “I have chosen to be happy because it is good for my health”.  A truly inspirational quote, and one that is supported by research – there is a lot of evidence that suggests that being positive makes you feel less stressed; has a positive influence on your immune system and has a huge influence on your overall well-being.

But how can we still remain positive when living with a chronic illness, which has such a negative influence on all areas of our lives?

Well, for me I have started to assemble a ‘positivity board’.  A board with cards, postcards, or letters that are both positive and in turn makes me feel more positive and happy despite being bed-bound or dealing with unpleasant.

The board is no way finished but at the moment includes a couple of cards that I found in a local art gallery that includes positive quotes, for example “Life is not measured by the number of breaths we take; but the number of moments that take our breath away” and my personal favourite “Life is not about waiting for the storm to pass but learning to dance in the rain.”  Also, on my board is a gorgeous card that was sent to me by a dear friend which has some really lovely words both outside and inside the card which I shall treasure and which brightened my day when I received it – a time when I really needed it.

I also found a couple of butterfly clips which I found in a local shop which I bought just to brighten the board and because of my love of butterflies.

Try making a board for yourself and fill it with all the things that make you happy or makes you feel a little more positive despite whatever circumstances that you often find it hard to cope with, or one which has a negative impact on your life.

Stay Calm…and make a positivity board!

photo

 

 

If you come across any cards that has any positive quotes or perhaps with a lovely picture of a butterfly or sunflower or anything else positive, let me know in the comments section and help fill my positivity board!

 

Thanks everyone! xx

HAWMC 2013 Day 1: What Got Me Started on The Blogging Journey…

318172_10150737724974254_36556179253_11203093_667572096_n

Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The first prompt reads as follows:

Why you write – tell us a little about why you write about your health online and what got you started.

imgres

Well, I got started writing about my health condition online on this very blog just over a year ago.  For years, before I got my definitive diagnosis, I was for years banded around the healthcare system visiting various consultants in different specialities, hearing the “it’s all in your head” diagnosis again and again.  Throughout this time, I felt scared, alone, isolated and so on.  The loneliness and isolation I felt was extreme – I felt as though I was the only one that was going through the pain of misdiagnosis and all of the symptoms that I have had for so long they were like old friends.

And so after my diagnosis, and joining various support groups; I felt it was time to start a blog – a place in which I can share my story and let other know that they are not alone.  Perhaps also hope – hope that one day they will too find that diagnosis that they have long been searching for.  It was actually a close friend, someone who also write her own fantastic blog, whom I met in a support group in which I am a member of who first suggested that I start the blog; encouraging me to share my story with others.  I had already regularly wrote in a journal, and felt a public blog was a natural progression for my writing as well as raising the profile for neurological conditions, which still seems to be under-discussed and not really publicised the same way as other conditions.

My condition is also unusual.  It is so unusual, that I have yet to meet anyone who has been diagnosed with the same condition, and so by writing the blog, I can maybe one day meet others with the same diagnosis.  However, this is not so important as I have not learnt that it is not the diagnosis that connects us but instead the experience of living with chronic illness.  There are many facets within chronic illness that are a part of the majority of chronic conditions such as fatigue, depression, pain and so on.

Apart from keeping the blog up to date, I also regularly take part in the ‘Health Activist’ Chat (#HAChat) on Twitter, in which myself and other health activists discuss various topics relating to healthcare and health activism.  I have also written articles for the ‘Invisible Illness Awareness Week‘ and a forum called ‘Disability Sanctuary‘.  In addition, the blog has enabled me to initiate contact with others with brain lesions, a couple of whom also has lesions on their brain stem like me, and this would just not be possible without the blog.

This year sees me getting involved with the ‘Health Activist Writer’s Month Challenge’ for the second year.  I get involved not only for the challenge for writing for an entire month continuously, but in my opinion the original prompts also challenge me as a writer and blogger – making you think deeply about the conditions in which we live with and writing them in a way in which we wouldn’t normally discuss them.  In addition, the HAWMC also allows us all the opportunity to connect with other health bloggers and read more about their journeys with chronic illness.  I have had the wonderful opportunity to meet many other health activists and bloggers through WEGO Health and the HAWMC.

And there you have it – how I started with how I started blogging about my health condition!

Living with illness…is like using a revolving door…

revolving-door

Hello to all readers new and old

Sorry that I have not been able to write a post sooner but life has been pretty hectic!  Lately, fatigue has been a constant feature in my life, so much so, that the hours that I have with my personal assistant has been extended over two days instead of using all the designated hours in the one day.  Added to that, is a new group that I have recently joined as well possibly being involved with setting up a brand new group for young people with disabilities in my local area.

And then of course, has been my health.  As most of you reading this, also living with chronic illness, will know, that life can be like a revolving door – symptoms can be stable and manageable and then out of the blue, there is a deterioration of said symptoms and then find yourself navigating said revolving doors through to yet more doctors visits, hospital visits, more tests and so on.  New symptoms appear, an example being the recent introduction of vision loss can be worrisome and can also question whether doctors have given the correct diagnosis, or whether it is possible that your condition is deteriorating.  New symptoms are like being handed pieces of an uncompleted jigsaw puzzle and then having to cipher where these pieces fit in the bigger picture of your condition.

And after the initial consultation with your G.P can often, particularly if the new symptoms are unusual or worrisome, result in (again!) being referred to the specialty that is connected with the particular health condition.  For me, not only have I referred back to Neurology, but am also awaiting for an appointment to seen an ophthalmologist.  Waiting for hospital appointments, not only can be long and tiresome, but also leaves you on tenterhooks; especially when the mail arrives each day, wondering whether today is the day in which that all important appointment letter will arrive!

 

imgres

 

That only then leaves the preparation for the actual appointment!  If I can offer any advice to any ‘spoonies’ out there, it would be this:

  • Make sure that you prepare for the appointment beforehand – if like, me you often find yourself remembering various information that you wished to discuss with your doctor AFTER the actual appointment, then it can be a really good idea to write a list of questions and points that you wish to discuss before your appointment.
  • You might wish to write down all the symptoms that you have experienced, I know from personal experience that I often forget to mention some of the symptoms that I have been experiencing
  • It can be quite unnerving attending hospitals; the often produce anxiety and fear, and often will forget some of the information that the doctor has given you, so it may be a good idea to ask a friend or family member to attend the appointment
  • Take a book, or something else to distract yourself from the anxiety, or even just to occupy the long wait in the waiting room

Any other tips that anyone has regarding attending hospital appointments?  Comment below and share them!!